Carbidopa/levodopa Dosing

[cookeint]

I have had Chronic Lyme since 1992 undiagnosed until 2004. PD diagnosed in 2005. I initially took 4 - per day - 25/100. I was able to decrease that to 2 often only 1 - 25/100 per day for 7 plus years. Until a year ago I was perfectly normal with no difficult off times - only the need to rest and sometimes a dragging of the left side occurred. Then a year ago I tanked. I see 3 neurologists and none can figure me out. Lately I don't go off until I take the 25/100. I will feel fine and then I take my dose at the proper time and I go into a hard off for an hour sometimes 3 hours --- basically paralyzed sometimes with pain levels at 9.. If I don't take the 25/100 I will eventually go off also. Has anyone experienced this. My scan did say that my dopamine receptors were not uptaking the dopamine therefore I have PD. Any thoughts or help for me????

[johntPM]

We have some similarities in our PD. I am 12 years post-diagnosis.

When I get up in the morning I feel good and can go about my business reasonably well. I can stay in this state, let's call it a weak "off", for several hours. (This suggests to me that I am still producing some dopamine). However, when I take my first dose of the day I initially deteriorate to an average off (it's as though my body has detected increased dopamine levels and switched the local expression off) until after about a hour, at the time of CMAX, I feel better than when I started.

First thing in the morning I am beginning to pick up pain in my lower shins. If I act quickly enough, this responds well to levodopa, but if not, it can last for hours.

I have nothing but general advice. Study the pharmacokinetics and pharmacodynamics of your drugs. Keep a diary of your condition. Work with your doctors to design a mini-clinical trial on you alone, where you try out different doses of your drugs and their time of taking, and, perhaps, try agonists and MAO-B inhibitors.

John

[cookeint in reply to johntPM]

Thank you. It is perplexing. I knew that there must be someone else experiancing this!

[glenandgerry]

This is very interesting as my husband (PWP) was also diagnosed 2005 and is similar to you johntPM He has cut his Sinemet right down to 1 or 2 tabs a day (25/100) because, like you, when he gets up in the morning (after having taken an extended release tablet the night before) he can go about his business reasonably well & can stay in that state for several hours. However after he takes the first tablet he does get dyskinesea which is not very pleasant.

He sometimes suffers with pain in his hamstring and calf but the trigger point is a crushed nerve in his spine according to the specialist.

Incidentally he was treated for tick bite fever in South Africa back in the late 80s and I was convinced that had something to do with inducing PD but he's had the basic Lyme test here in the UK on the NHS which showed a negative result, although I understand this particular test often produces a false negative so guess our only other option is to pay to have more extensive tests done privately.

[cookeint in reply to glenandgerry]

The gold standard to recieve an accurate Lyme diagno sis is to. SEND YOUR BLOOD TO STONEY BROOK LABORITORIES IN STONEYBROOK, NEW YORK. AND MAKE SURE THEY TEST FOR ALL TICK BORNE DISEASES. I actually saved a friend of mine who was diagnosed with PSP at YALE and told she wss going to die and her lyme test was negative. I convienced her to go to my doc and guess what it is Lyme and she is improving! Be well!

[glenandgerry in reply to cookeint]

Thanks cookeint We are in the UK and I understand there are other specialised testing agents over here and in Holland which I need to look into. Also need someone to take the bloods - all this private stuff starts getting expensive

[cookeint]

I agree -- over the years I have spent thousands !!!!!!!!!!!!!!!!1